Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

New Here

Hi! My name is Allison and I am SO glad to have found this group. I have browsed some of the posts and while I am so terribly sorry to hear of others dealing with the same issues I have, but at the same time I am thankful to find others that understand what I am going through.

I had a PE June 15th in my right lung. Pleuritic chest pain and shortness of breath. I was misdiagnosed twice before getting the correct diagnosis. I spent a week in the hospital on Heparin and then waiting for my INR to become therapeutic. I take 8mg Warfarin daily.

I was 29 when my PE happened. They found no clots in my legs. I think there were two in my lung. I was 6 months post-partum with my second child, long enough that they don't think the pregnancy/delivery had anything to do with it. Basically my only risk factor besides being overweight was oral contraceptives. I had just finished my 2nd pack after having the baby. I am not/never have been a smoker either.

My doctor and hematologist are almost certain that the birth control pills are to blame, however, my activated protein C came back a bit out of range. They want to repeat the test after I come off Warfarin in April. They will repeat the CT lung scan then to see if the clots have dissolved. My doctor feels that if I had a clotting disorder that it would have presented itself during one of my pregnancies (both were full term and uncomplicated) I hope this is true.

My anxiety (which I had prior to the PE) is out of control. I have two young boys 3yo, and 9 months, and the thought of something else happening is just unbearable. In fact, my anxiety is almost debilitating. I do hope it gets better. I take Buspar and Xanax right now.

Well, sorry to have written a book, I am glad to meet you all and I look forward getting to know you.

For some buspar works wonders - give it at least 3 weeks or so and you should feel some effects. If it doesn't work, there are tons of other options.

The oral contraceptives are a big risk factor - you are probably in the clear.

Anxiety is no fun at all. I just started zoloft and I am taking lorazepam as needed until that kicks in. A few of my friends have had good experiences on zoloft, so we will see how that goes. You have my sympathy.

Anyway, you are going to be fine. I know it doesn't feel like that now, but the odds are with you!

Anxiety is something that each of us surivors have faced following our DVT/PE. It's completely normal and the key is not to let the fear consume you (something easier said then done; I know).

Part of overcoming that anxiety is learning. Here are several links that may provide some insight:

www.stoptheclot.org - Website of the National Alliance for Thrombosis and Thrombophilia (NATT). This organization was formed by patients who had suffered blood clots. It is the only non-profit patient organization funded by the government to raise awareness about DVT/PE and blood clotting disorder.

www.fvleiden.org - A website started in 1998 by a friend of mine. This is the oldest patient based website and Deb who runs it has collected a lot of resource information over the years.

Lastly, here is a newsletter which my organization (NATT) sent out in 2008 that discusses Women's Health Issues (specifically birth control and pregnancy). This information may provide some useful information:

The worst of the danger is gone quickly once you have made it into treatment. The worst of the fear, however, lasts much longer.
Gaining knowledge brings empowerment and empowerment beats fear. Also,
I would like to add that I got a lot of benefit from getting outdoors, however practical that may be especially with small children. Bundle them up and get them out with you if you can. Every minute outdoors is a minute that is much easier to live with, until you regain some sense of normalcy.
Good luck and Godspeed.

Welcome to the group. I'm glad you made it through. I understand about the anxiety. Mine got a lot worse after my PE as well. Mine was caused by the pill and now I have a no estrogen IUD. I am also on coumadin for life because I have a blood clotting disorder. Keep coming to this site for support and your anxiety will get better over time. Hang in there.

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